Aniridia Network

05/08/2026

Lovely to hear of Grace's resilience, kindness, positivity and her shining light alongside having WAGR.

Congratulations to Grace, who has WAGR and won the local Child of Sussex awards in June. She was nominated by her school, and then got through to the final 50 nominees. She won her category of Chil…

03/08/2026

News of the 'RAFT' cornea treatment research at

New clinical trial data suggest that RAFT-OS transplant offers a potential regenerative treatment strategy in advanced ARK.

02/08/2026

Good speed and donations to Leigh and Paul

19/07/2026

Another father we heard from during our Aniridia Day meetup was Simon, who has aniridia as well as his son. So here he shares his experience from both sides, as a patient and a parent.

At our recent online meetup to mark Aniridia Day and Father’s Day, we heard from Simon, 43, who has aniridia and is bringing up a child with the same condition. In his talk he shared what it’…

19/07/2026

Empathising with my son – Raising a child with anirida when you have it too

At our recent online meetup to mark Aniridia Day and Father's Day, we heard from Simon, 43, who has aniridia and is bringing up a child with the same condition. In his talk he shared what it’s like to navigate aniridia from both sides. His son is going through many of the same things that he did growing up, yet the world has also changed and many of the challenges are new or different....

At our recent online meetup to mark Aniridia Day and Father’s Day, we heard from Simon, 43, who has aniridia and is bringing up a child with the same condition. In his talk he shared what it’…

18/07/2026

At our recent online meet up for Aniridia Day and Father's Day, Mark reflected on what he has learned over nearly 30 years of supporting his son Harry, who has aniridia. Check out the video and transcript of his talk here:

This year’s Aniridia Day on 21 June coincided with Father’s Day. So we held a special online meet up to explore parenting topics, with 3 short talks and an open discussion. One of the t…

18/07/2026

Looking Back on Aniridia – 30 Years of Learning

This year's Aniridia Day on 21 June coincided with Father's Day. So we held a special online meet up to explore parenting topics, with 3 short talks and an open discussion. One of the talks was by Mark, 62, who has spent almost three decades supporting his son Harry, 29, who has aniridia. Mark reflected on what he has learned over that time, from Harry's diagnosis through his childhood, school, and into adulthood — and the highs and lows along the way....

This year’s Aniridia Day on 21 June coincided with Father’s Day. So we held a special online meet up to explore parenting topics, with 3 short talks and an open discussion. One of the t…

06/07/2026

Robert with aniridia is campaigning to be able to travel his local dark. overgrown paths in Wrexham with confidence.

By Robert, who has aniridia You have probably been asked this question before: Are you a glass-half-full or a glass-half-empty person?  Well, let me rephrase that for our community. Are you a …

06/07/2026

The playlist featuring presentations from the 8th European Aniridia Conference is now available online.

Watch expert talks, research updates, and patient perspectives from EAC 2026 whenever it suits you.

🎬 Access the playlist here: https://youtube.com/playlist?list=PLZR1jlaxUTB4&si=cy4_ItIC2DVuvM39

Together, we continue to spread awareness, improve knowledge, and join forces for better care and a better future for people living with aniridia.